Gina is a breast cancer previvor. She discovered her BRCA1 gene mutation through a direct-to-consumer genetic test. She took a preventive path to significantly decrease her risk for breast and ovarian cancer. You may read more on her journey here. However, this mutation doesn’t only affect her, but also her son and potentially her grandchildren. She is writing from the perspective of a mother with two kids and how she would communicate this news to them. We hope this article will help anyone in the same position and shed light to the importance of honest conversations regarding cancer and making the right preventive decisions.
How to tell your children about your BRCA1 or BRCA2 gene mutation.
My Sweet Creations,
I have something very important to share with the two of you, so please disengage from all devices and hear me out.
As I reflect on my life, I realize I have spent a lot of time trying to prevent a multitude of undesirable circumstances. Some examples are: unwanted pregnancies, illnesses, cavities and accidents. From seatbelts to deodorant, prevention is a silent habit many people do, but never contemplate or notice.
The art of prevention is part of everyone’s day in some way or another, perhaps that is why this letter is at once the hardest and easiest I have ever had to write. You see, I recently learned I carry a genetic mutation called BRCA1. This mutation increases my risk of developing a variety of cancers, Breast and Ovarian being the two leading the race.
How do I know and what does it mean? Well, I know because your father and I thought it would be fun to spit into tiny tubes, send the little bottles off to a lab, and discover where the roots of our heritage lie. At the last minute, we decided to add the health component to each of our assessments. In all honesty, I thought at best, I would have zero indicators and at worst, I would have to cut back on sugar because I was at an increased risk for developing diabetes. However, the result came back stating I clearly carried the BRCA1 mutation and the company highly recommended I make an appointment with someone well versed in genetics. I quickly heeded their advice and connected with a master of all things DNA. She was wonderful and walked me through my options, of which there were three. 1) I could bury my head in the sand and ignore it, 2) increase screenings and alter my diet/exercise routines or 3) consider preventive surgeries. She explained the home test could not be used as a diagnostic tool and confirmation via a blood test was required. Once the result was verified, I reflected, meditated, prayed, cried, lost a lot of sleep, had many conversations with your father and quite a few appointments with talented physicians before making the hard decision to take the surgical preventative path.
Why this path?
Because I feel it is simply the best choice for me. I spent a substantial amount of time researching, joined a number of support groups, and realized I am fortunate to have made it this far in my life without being exposed to breast or ovarian cancer in some fashion. Many others have not been as lucky and have either lost loved ones to these horrible diseases, watched a loved one suffer the effects of treatment, or conquered the beasts themselves. It is clear this mutation comes directly from my father and being of Ashkenazi Jewish descent comes with a higher risk for carrying the mutation than other heritages. Oh, how I wish Grandpa was still here to discuss all of this with, but as you both know, there is no one left on his side of the family. That is why it is so important for me to have this chat with you both.
My mind often returns to your dad’s philosophy that your body is like a fancy car and physicians are extremely talented mechanics. Imagine if after many years, you received a notice in the mail stating your beloved car was being recalled due to an internal flaw. The detected defect carried a high probability of causing an accident in the years ahead and any wreck caused by this imperfection had a high probability of profound damage or destruction beyond repair. However, modifications could be made to the internal structure of the vehicle, drastically reducing the risk of accidents caused by this obscure anomaly. What would you do?
What does the road to surgical prevention look like?
My first surgery will be a complete hysterectomy. To ensure there is zero ovarian tissue left, the doctor will remove my ovaries, fallopian tubes and uterus. This surgery will throw me directly into menopause; therefore, I will beg for forgiveness now. I want to be sure you are aptly prepared for some heightened emotional outbursts and are equipped with extra winter clothes for when the hot flashes take over my being and I turn the house into an igloo.
Once my body has had time to recover, I will head back into the operating room for a preventative double mastectomy. All my breast tissue will be removed. The doctor will determine if I am a candidate for immediate reconstruction or if reconstruction will require several steps. No matter what the doctor decides, once the surgery is complete, the fear of developing breast cancer will fade to an obscure memory.
It is important to know the BRCA positive journey will not completely end for me after these surgeries. Research shows, while not as high of a percentage as breast or ovarian, carriers are also at an increased risk for melanoma, colon, pancreas, and prostate (men) cancers. I will need to stay proactive in my care and commit to having routine checks with specialists.
How does this diagnosis affect the two of you?
Since we know for certain I carry the mutation, there is a 50% chance you inherited the mutation yourselves. There is no way to know if you have it without the proper test. Since you are both adults, you will have to make the decision to test on your own and I will fully support you, no matter what you decide. IF you win the coin toss and test negative, I will celebrate the result, breathe a sigh of relief and rejoice knowing you and your children (if you choose to have any) will not have to worry about this fate. IF you test positive, I will be here to listen, love and guide you through your own road ahead.
Where do we go from here?
It is cliché to say it, but no one knows what the future holds. However, I feel as though knowing is a gift. One that is allowing me to be proactive versus reactive with my healthcare choices. This path to prevention is a chance for me to course correct now so I can hopefully continue to be present for many years to come. There is nothing I want more in this life than to be here to create loving and long-lasting memories, with you, my favorite humans.
Please take a little time to process this information. I am here if/when you have any questions. Thank you for being the reasons I strive to be the best version of myself and for being the lights to guide me through the dark.
You may not remember this song, but I played it many times when you were little enough to hold in my arms. The two of you and this song will forever hold a special place in my heart.
I love you both always, in all ways
Your one and only Mother
Thank you for taking the time to read Gina’s message. You may read more of her reflections on her personal blog. Don’t hesitate to reach us through any of these emails: veronica@helenhealth.ai, samantha@helenhealth.ai, or raffy@helenhealth.ai if you have any questions or would like to chat. We’re here to listen and help in your prevention journey! Stay Healthy!